parentingcfs

Navigating adolescent CFS

RCH CFS Clinic Part 3 August 24, 2012

Filed under: CFS Resources,CFS Symptoms,CFS Treatments — parentingcfs @ 5:56 am
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Our girl woke up with a little more energy today which was good timing as it was Royal Children’s Hospital day!

For a start, going to the hospital is so much nicer now it is in the new building…money well spent I say. Also our girl got to have both parents along this time…you know how much teenagers LOVE that! Nah, it was all very cosy… she doesn’t see enough people at the moment to be too cheeky with the ones who hang around!!

Anyhow, feel great about the hospital clinic again. It turns out that the physio we are seeing at the hospital is good friends with one of the physios our girl’s been working with so all very easy to work together. So the physio session was a discussion of that, a breathing session for our girl…6 deep breaths in a careful position with chin dropped…and a 5 minute shoulder massage!! (Jealous me??? Ok maybe a tiny bit!) The physio says our daughter’s shoulder muscles are incredibly tight. Are your children’s? It was suggested the breathing exercise could be used in class to perk herself up. Deep breathing is certainly something I see as very helpful in helping our girl return to full health. She has breathed very shallowly since she became ill….and of course used to breathe beautifully as a swimmer. That changed overnight.

After that we had a brief session with the lovely Occupational Therapist who gave us some forms to fill in about sleep patterns and daily activity. We have done similar work with the exercise therapist last year and it was very beneficial…it was just the exercise part that wasn’t quite right for us in that situation.

Then we had a half hour break so we could get some lunch and give our girl a rest from concentrating. After lunch our girl had half an hour with the psychologist and then her dad and I did. It was all very supportive eg “Do you have any concerns about…?” etc.

It’s so NICE to have professionals telling you you are doing the right things AND helping you try to make things better. I really do feel like we have a team by our side at last! EVERY child with this diagnosis needs access to a group like this. I’s not everything but it’s a great beginning.

Hugs to all and do tell me if you notice your child’s slumped posture and if their shoulders are very tight? The physiotherapist says posture IS an issue for all of them.

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Thank you all.

Filed under: General — parentingcfs @ 5:16 am

I’ve been overwhelmed by the response to my last post both here and in other forums. Sad parents in similar circumstances wrote in and were incredibly supportive and also many friends kindly reacted to my bleak moment. I am extremely grateful to everyone. Anyone who has had to go through any kind of adversity must know how heartwarming such support is. Thank you.

In addition, close friends who happen to be parents of my daughter’s friends have encouraged their daughters to drop by this week and that has boosted our girl’s spirits no end. It is very easy in this situation to feel that you are not very interesting since you don’t get out of the house much and our girl is often reluctant to reach out. Also two of her beautiful new friends from high school have arranged to come by this weekend, which means the world. I am full of gratitude.

Thank you so much to everyone for just hearing us and being there x

 

Frustrated ‘fixer’ mother. August 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:28 am
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We tried rest, didn’t work. We tried medication, worked for months then abruptly stopped working. We tried exercise, she got worse. We tried rest, she got worse. Now we’ve finally found someone who can do a very careful strengthening routine with her…and this week she’s worse again. If you haven’t lived this you cannot understand how it feels when your 13 year old doesn’t want to see another clinician because ” They don’t know anything. They can’t help me.”

I now know I’m a fixer. I can’t accept that I can’t find an answer to my daughter feeling too unwell to go to school or have any kind of active life. And yet, after nearly 2 years, acceptance is becoming my greatest friend…it protects me from the agony of false hope. I would do anything to help my child and here I am where there is virtually nothing I can do except love her, feed her and let her do anything she’s up to.

I’m getting pretty angry about the lack of attention and funding this illness has received to date. This morning I sat there watching her make herself swallow medication and wondered at the immense responsibility I have for this life as I daily make decisions on what she takes/eats/does with absolutely no evidence-based guidebook. The responsibility comes with parenting of course, you never know the cards you will be dealt. But most people get a little more research thrown their way when chronic illness rears its head.

I’m, of course, hoping this week’s sore throat, dizziness and weak legs is due to a virus and not the gentle pilates. But am I kidding myself? Whatever the cause we’ve eased back off the ‘exercise’ for the moment again. (Exercise in this case is lying on the floor with her head raised slightly and raising and dropping her arms. Seriously. Do you get what I’m saying?  This wipes out a child who used to do 50 push ups plus other exercises then swim for 90 minutes.)

Anyhow, I just needed to vent. My girl can still get out of bed, mostly. We have a roof over our head and enough money. We have loving extended family and great friends. If spring could just come…..

 

RCH CFS Clinic Part 2 August 14, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 5:20 am
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The nurse coordinator at the clinic didn’t have time to get back to me yesterday but did call this morning to let me know the team decision. She wasn’t even supposed to be in the office but had popped in for a couple of hours before doing her late shift nursing to finish her to do list. Services like health and education only function as well as they do because of committed people like this right?

So our girl has been invited to participate in four 2 hour sessions with the team over four Fridays. We could do it fortnightly x 4 if we wanted but are happy to do it weekly as close by. They can only offer us that length of time because there are so many children on the waiting list but if our girl needed it she could be referred back again. Which would entail quite a wait I’m guessing. So we’ll make the most of it while we can.

Also the physiotherapist (PT for those in the US) we saw there yesterday called us (even though also not her day at the hospital) to see how our girl had pulled up today. Honestly after 18 months of so little professional support it feels like Christmas! I told her that my daughter was indeed very tired and nauseated this morning but not too much worse than usual. Also yesterday afternoon she told me she was very brain dead after all the concentrating but she was happy to do it as everyone ‘was so nice’.

Talking to the physio further confirmed my impression that this group of professionals really are as up to date as possible and not peddling any outdated and sadly dangerous ideas about ‘just getting on with it’. It’s so great! They are only funded until November and then have to reapply…. Need many more staff than they have. We wouldn’t believe the waiting list apparently..you know what, I think we just might have some idea!

I also heard today that there is a new follow up study out that followed people diagnosed as adolescents over 25 years and found an 85% recovery rate. Haven’t seen it myself yet but it’s the best stats so far so I’m happy!

I think that’s all for now. We are off to the private physiotherapist tomorrow…and then hopefully our girl will manage to make it to school Thursday….it is Week 5 of term after all! But hey, no big deal! There’s always next week, next term, next year!

Smile and wave boys, smile and wave!

 

NEW Royal Children’s Hospital Melbourne CFS clinic August 13, 2012

Oh my. I almost have to pinch myself to believe. This morning I have taken my beautiful daughter to a clinic filled with compassionate professionals who who were purely there to help us deal with the ME/CFS  mire as best we could. You know, the kind of clinic that other chronically ill kids get referred to upon diagnosis?

It is a new initiative that Dr Kathy Rowe (and maybe others that I don’t know of) have fought hard to get up and running. Funding is very limited as I understand it (surprise surprise) but it has been especially earmarked for this project – and there is research going on as well! Halle -bloody-julah!

The clinic operates Mondays and Fridays. This morning our girl saw an OT and physiotherapist mainly together, then the physio got her to do one brief exercise, took heart rate etc. After that we saw a teacher consultant who actually provided us with papers for a student health support plan. Crazy that this is the first time we’ve seen one in 18 months of illness. Also heard about the Education Institute where our girl is entitled to access 40 one on one tutoring sessions a year! Who knew?! I can’t tell you how it felt to have the resources, that other chronically ill children in Australia get, offered to us with the CFS diagnosis. This acknowledgement, whilst still in its’ infancy, means the world and I sure hope is a sign of thinks to come. It cannot come too quickly.

Our girl also had a 45 minute session with a young psychologist which she seemed happy enough about. The approach seemed very supportive and my 13 year old felt comfortable enough by this stage to be fine with me leaving the room. It was a great sign. After that we saw the rehabilitation doctor who is overseeing the clinic. He just got some of the medical details and had a little chat.

Then our girl filled in a psychological test to gauge where she is at. She found some of the questions hard to answer..natural modesty interferes with how one thinks one should respond to “I think I am smart’ for example! However she had no hesitation when it came to answering “I like to hurt animals” with a resounding NEVER! It gave us a few giggles (not the idea of hurting animals obviously) and she kept looking to me for answers and I had to remind her it was how SHE felt about the statement and herself, not me.

Things such as the psychological evaluation and some goal setting that our girl did with the OT (getting to school was the top of her list, as was being able to get out of bed everyday!) helps the team to evaluate outcomes. Science…we like that!

The team is meeting now to see what they can offer us. I suspect it will be participation in the Outpatient program (attendance once a week for 4 to 8 weeks) with the inclusion of our physiotherapist that we discovered last week. RCH does now also have an inpatient program that runs for 4 weeks. There’s a HUGE waiting list for the clinic already apparently and they’ve only been going 3 weeks. We feel lucky to have somehow got in so early.

The emphasis seems to be on helping our girl get a grip on how best to manage the illness in the long term (although she will recover) as well as improving what she can do in the short term.

I’m just so pleased to see such a service up and running at the Children’s. Now to keep the funding going.

I’ll let you know what we hear.

Big smiles!!

 

 

Physiotherapy Part 2 August 12, 2012

Filed under: CFS Resources,CFS Treatments — parentingcfs @ 8:05 am
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For those of you who are interested our second visit to the physiotherapist also went well.

I asked more questions which he patiently answered and my girl did various pilates exercises. At one point, with the help of some equipment she raised her legs to nearly 90 degrees for the first time in over 18 months…..

She has continued to do the set exercise a little each day and has been getting up and showering every morning and had a few outings!!! All very exciting.

Of course, it’s very early days but she just might have pulled out of the several month long crash for whatever reason….I hope.

School as always is the test. However tomorrow we are going to a four hour clinic at the Royal Children’s Hospital. It is a newish set up. We will see an occupational therapist, a clinical psychologist, a rehab doctor, a physiotherapist and an education support person.

Such a long clinic is not ideal but having spoken to the coordinator now I can see it’s early days and they really are trying to get their heads around what they can do to help. My daughter was point blank refusing to go because the session was so long and ‘they can’t help me anyway’ (so sad to hear her say). However she spoke to the lovely coordinator on the phone on Friday and has declared her ‘an angel’ and feels that she will be understood and looked after and is happy to go. Terribly early start for us but hopefully will be worth it.

I’ll let you if I learn anything new!

Best wishes, smiles and waves! x

 

Theory #4539 but it works for me! August 9, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 7:30 am
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After the darkest hour comes the dawn….

Yesterday was an extraordinary day. I started with the emotions of my previous post and finished with a whole lot of new knowledge and support that has filled me with hope again.

I’m going to try to explain the theory but please bear with me as it’s all very new to me and I’m just getting my head around it but want to share it with those of you who need information asap.

Please remember I am not a doctor, in fact have no scientific qualifications beyond Year 12 Human Biology where my favourite chapter was the one on evolution because that was like History!

Ok here goes. As I understand it the theory is that:

a) the underlying genetic predisposition is ‘lax’ (I think that’s the right word) collagen

b) my daughter IS possibly hypermobile (pauciarticular which just means one joint as far as I can gather?)

c) her rapid growth spurt…probably combined with an increased swimming load…was the trauma that triggered the lax collagen to become an issue

d) the issue is something to do with there not being enough room in the  thoracic cervical spinal canal for the nerves to operate properly. This triggers the ANS dysfunction.

The physiotherapist demonstrated the problem in my daughter by

– raising her legs one at a time when she was lying flat. Her right leg reached 45 degrees, her left 35 degrees. He then had someone hold her head so that her neck was relaxed then move it towards her chest so it was in flexion. It opens the spinal canal to allow more room. At this point he raised her legs again and they moved to about 70 degrees. (Please be very careful if you try this at home, my description is not technically accurate)

So, as I understand it the plan is to exercise WITH THE NECK IN FLEXION (or however it’s properly phrased!) The aim is to retrain the system. He uses pilates techniques. I don’t think it will cure her but it should allow her to get stronger and start exercising again.

Sorry for my very laywoman description. I will try to improve this post when I get my head around it better. I just thought you’d like to know about it sooner rather than later. The physiotherapist says the problem is this simple and there is too little funding for research/education because no drug company benefits!?!

We are seeing him again today so that he can see the impact of what our girl did yesterday and set up a program. It’s nice to have some practical support and A PLAN! Some of you will know how long I’ve been looking for a very basic careful exercise plan for our girl that takes this condition, whatever it is, into account. This may be it!

So, what do you think? Did you know this already? Do you think it is only part of the problem or the cause? Does the theory make sense for your child or for you? In adults the trauma trigger could be many things…although I don’t get how a viral trigger would impact on the spinal canal? Anyhow here it is, we’re going to run with it for now!

Oh and I just wanted to say to all the lovely people who have contacted me online or otherwise this week and offered words of kindness, thank you. It means so much.

Smiling and waving again!